Emma

From reading everyone’s responses, I think we “former fitness devotees” have discovered that we now need to make adjustments – – in duration, frequency, and type of exercise. It’s also an ego adjustment too; to not get caught up in comparing what we used to be able to do. Our bodies need daily movement… it doesn’t have to be traditional…[Read more]

Andrew, that is good news about your recent EMG and that your neurologist explained and reassured you. I’m glad our forum members could offer you insight and support. Best wishes on your road to finding a diagnosis.

Bravo Bill! You certainly are maintaining your physical activity – – along with a well-thought-out transition plan.

London Marathon in October! And hand-cycling in the 2023 Boston Marathon! Those are some fantastic goals! Go for it 😉

John, the one thing I’ve learned from reading our forum member’s comments – – is that we all have slightly different variations of similar symptoms. That said, my own experience was to have achy pain in my shin and thigh of the leg that had foot drop. This was during my first year. But the combination of medication, regular range-of-motion…[Read more]

@ Mike and @John,

First, thank you for sharing your stories. I am glad that you found the forums a safe place to share and process some of what you are both experiencing.  As you can see, our online community is amazingly supportive. Also, you know that you are not alone in dealing with some doctors who are not well informed about ALS and in my…[Read more]

Lisa,

What a wonderful idea and thank you so much for sharing.  I posted this on my FB page!!  Definitely add this to the ALS Awareness Month forum if you haven’t already!!!

Amanda

I agree with you Trevor.
Mike – – it does take a long time for many patients to finally have a definitive diagnosis. Some see the same neurologist, but the symptoms are so slow that an early determination can’t be made. Others (like what seems to have happened to you) see numerous physicians but due to their lack of familiarity with ALS, are…[Read more]

Congrats Lisa! What a unique and wonderful experience. it’s great to hear the feedback about the director and crew. I had emailed back and forth with the director early on – – when he asked me if I knew anyone with ALS who might want to be in his movie (HA!) and he was kind and considerate then too. ………..and to be in your sister’s wheelchair…[Read more]

Bravo Pauline! I like your attitude! …and am happy to read that you were able to find the resources that helped you early on.

@Nancy,

It’s been a while since we started this thread and I wanted to check in with you and see how things were going.  I know from your previous post that you and your husband had a lot on your plates.  How are you both doing now?

Hey there cALS,

How is everyone doing now that we are a quarter the way through 2022?  Do you have any updates, funny stories or memories you would like to share?

Chime in and let us know how things are going!!

Amanda

John,

I found this on the AARP website.  I don’t know if it will be helpful for you or not.

https://www.aarp.org/retirement/social-security/questions-answers/enroll-medicare-not-ss.html

Can I get Medicare if I’m not getting Social Security yet?
AARP

Yes. But you should be aware of the enrollment deadlines, as Social Security wi…[Read more]

Bill, that is a lot of loss! I am so sorry.  Do you have favorite memories that you could share of each of them?  Sometimes when I miss my father, I try to think of something he did that always made me laugh or smile.  I hope that you have a lot of fond memories to hold on to.

Thank you for adding that, Kathy. There are so many pieces to the medicare/disability puzzle – – every little bit helps!

John, Here are some helpful tips and information:

1. There are special Medicare eligibility rules for people with ALS. You’re eligible for Medicare as soon as your SSDI benefits begin (and there’s no longer a waiting period for SSDI as of 2021).
2. To qualify for SSDI: If you have worked at least five of the last ten years and have paid taxes for…[Read more]

I’m so sorry for your loss, John. We appreciate you joining us here on the forums.